Parenting developmentally disabled children will always be a special challenge. It need not be a nightmare. In addition to meeting the usual parenting challenges, parents of disabled children face a gauntlet of added obstacles that can try the resolve and resources of even the strongest families. But navigating the complex
medical, educational, occupational, and social issues can be made easier with the right information.

Wednesday, November 30, 2005

Teens and young adults have this thing about parents’ cars even when they have their own. Why should a low functioning person with Down Syndrome and Autism be any different? Billy Ray has an old van (my former car which I kept when I bought a little station wagon several years ago). His support staff drives and they use it for his community activities. Billy Ray still loves to use Mom’s “station” every chance he gets.

This morning we have lots of snow. That makes the perfect excuse for him to borrow Mom’s car. The all wheel drive will be best to deliver Meals on Wheels to seniors. He saw my keys on the breakfast bar a little while ago. “Snow” he said, then “keys.” Yes Billy Ray you can borrow Mom’s car today.

It is nice to know that disabilities do not have to take away all the normal mother-son things.

Tuesday, November 29, 2005

We can get frustrated as parents when no one seems to understand our children. I spent years being defensive and angry with lack of understanding for Billy Ray. It felt like people who did not have clue what we experienced were judging Billy Ray and me.

One day in a conversation with a friend, I tried to explain why Billy Ray is often dressed well and I am in jeans with wet hair and no makeup when we get to church on a Sunday morning. Doing my makeup, hair and getting dressed before giving Billy Ray’s bath is a waste of time because he splashes water and I get lotions and toothpaste, etc. all over me getting him ready. Once he is ready to go, he thinks it is time to go. To make him wait too long for me to get ready will likely agitate him to the point he may flop on the floor in confusion or agitation and be unwilling to go out the door. Sometimes it is a choice to go without the primping I would like to do for my own appearance or to stay home.

I was hurt by her seeming lack of interest in my explanation. Later as I thought about the conversation, it was like a light dawning. How could she absorb what I was so laboriously heaping on her. Would I have been able to do that before Autism came into our life? Probably not.

During my husband’s recent visit to his sons in California, my consultant friend, Keddie, came over to spend the evening and night with us. She left the guest room door open because she said she wanted to get a better picture of what our nights are like. The next morning she told me that while the journal we maintain on Billy Ray’s computer show the times we are awake in the night she would never had realized what the nights are really like had she not come for the night. Keddie is a skilled consultant who has many years of experience with people who experience of variety of disabilities. If she needed to see it to grasp the bouncing, noise, and interrupted sleep how we expect the general public to comprehend it.

The same is true of professionals or people we meet in the community. They see our children as they are when they meet us. What we experience everyday alludes them because our children may behave one way in one environment and another way in a different place.

One of the biggest jobs we have as parents is to educate those involved with our children. It is just as unrealistic for us to expect them to understand as it is for them to expect our children to act in certain ways.

I just wanted to add too that the our children have a big job in educating us as parents. On occasion when I will instruct Billy Ray to be a little quieter in the morning he will say “I can’t”. My lack of understanding must frustrate him at times as much as society frustrates us as parents.

Monday, November 28, 2005

In her article KILLING AUTISM IS A CONSTANT BATTLE, Sue Rubin talks about the morning routine she experiences. She relates waking up screaming and the need to run around the house fast – impulses she can’t really control.Literature relative to Autism and other special needs provide methods for working with our children. What I find the most helpful is articles like Sue Rubin’s and much of Temple Grandin’s work where they share what happens in a day to day experience. That understanding of why Billy Ray may behave the way he does rather than just what to do about it gives me something to build on.In redesigning Billy Ray’s schedule this weekend, I thought about his apparent need to just run and pace in the morning. Instead of fighting it we just put a place for it in his schedule right after testing his blood sugar and taking some important medication. We encouraged him to put his walkman on and do his “circle” (running around the breakfast bar and through the kitchen and living room). This acceptance of his need to do this seemed to make him feel more comfortable. When he was finished, he was able to settle down and stay more focused on making his breakfast and the rest of the activities of his morning.The writings of those who are willing to be open about their experiences makes such a difference in our ability to understand and adapt to our children.Until tomorrow,Peggy Lou Morganhttp://www.parentingyourcomplexchild.com/http://www.ligthhouseparents.com/

Saturday, November 26, 2005

Today was the first day of starting over to find out what is bothering Billy Ray and causing his increased agitation/aggression. I am exhausted but it seems important to share this process with you.

Billy Ray was awake at 4:30 a.m. having fallen asleep early last night and only waking once during the night. We did get some sleep albeit in two parts. I am thankful for that.

Keeping him in his room so as not to wake up my husband, I put a movie on for him and sat reading his journal (on the computer in his room). It does appear that we have a conflict going on inside of Billy Ray that I suggested yesterday, he wants to be busier, is more confused than normal and is not physically back to normal from the health crisis he is trying to overcome.

I think I figured out at least one small thing that may help and created a visual for it.

I learned a hard lesson for our long time developmental pediatrician, Dr. Mary Lynn O’brien. That was to evaluate the risk in letting Billy Ray do an activity opposed to the loss in the quality of his life if he does participate.

His present support staff is a caring man who is very protective of Billy Ray. He is worried if Billy Ray comes near a hot stove he will get burned. That is certainly a risk.

In teaching Billy Ray to do as many independent tasks as possible I try to teach him to do them safely. See the above picture. It is not the best quality picture but I think you can see what I am saying. He is taught to hold onto the handle of the skillet while scrambling his eggs and to stand slightly back. He is able to do a pretty good job of it. His self esteem is enhanced by cooking his own breakfast. It is probably worth the risk of a burn, as long as we minimize the risk as much as possible.

I am sure this is not the only issue. I looked at the schedules before we moved (just before Christmas) and before he got so sick early summer. There is a long ways to get him back to normal for him. Baby steps and adapting will be necessary. Communicating with Billy Ray and with the professionals involved are also going to be needed.

Friday, November 25, 2005

Yesterday was a contradiction in many ways. It started out by getting my grandma’s recipe for scalloped potatoes in the oven and making the stuffing for the turkey. I was thinking of what I am thankful for. When I got to a stopping point in dinner preparations I came into my office and started writing a blog post relative to something I have always wanted to express…my gratitude to Billy Ray’s birth parents for giving him life and placing him for adoption when they didn’t feel they could handle a disabled child.

Before I could finish that post Billy Ray’s behavior became difficult. Support staff was here with us but it took both of us to intervene when Billy Ray was throwing furniture, knocking things out of the china hutch, etc., etc. When that happens I invariably go through a period of feeling defeated and a failure at providing appropriate care for my beloved son. I wonder if I should be sharing any of my methods for working with Billy Ray if we still relapse. After feeling sorry for myself for a while, I know that the best I have to offer you is to be real about what we experience so that if you experience similar you will know you aren’t alone.

Billy Ray is more verbal than some complex children. However, when it comes to communicating his frustration or physical pain he is not able to “get it out” in a way that helps us to know what he is experiencing. Many times his behavior is the best indicator that something is wrong in his life. I wrote about this in two recent posts Communication by Behavior and Change is Coming.

When unusual behaviors occur when we think we have him stabilized it means we need to regroup. I talk to Billy Ray as though he could carry on a two-way conversation. I want him to feel a part of the solution for his own life. Yesterday, I told him that we are going to look at his schedule to see if it might be irritating or if he is hurting some place. I asked him to let me know in anyway that he can what is bothering him.

We try different things. Some work others don’t. For example, his psychiatrist suggested Omega 3 fish oils for his behavior which we did. When Billy Ray had some pretty severe behaviors a week and a half ago, his primary medical provider suggested that we hold the fish oil for a week to see if that was irritating his gastritis and causing him severe pain. With yesterday’s behavior it is clear that isn't the problem.

After events like this I read the journal again and sometimes twice. It is amazing how looking at events that happened before behaviors seem more clear reading about them a week later than the day they happen. Sometimes the trigger to a behavior is there and you wonder why you didn’t notice before. When you are in the midst of a behavior crisis it is hard to see things as clearly.

Sometimes it is his schedule, others times it is physical. He is demonstrating signs that it is physical and also that he wants to be more involved in activities. In my Change is Coming post I wrote that he is demonstrating by doing more things that he wants to be busier. On the other hand, he is demonstrating that something is wrong physically in several ways 1) he just can't get comfortable in his clothes and is wanting sweats on in the middle of the day (it is usually hard to get him to put them on just to sleep in), 2) he is more in a Mommie phase where he wants me to do everything for him every though he enjoys a lot of "buddy" activities with his support staff and his stepfather normally and 3) his behavior is more severe than usual (the most severe behaviors have occurred when something is physically wrong). I have spoken to all the doctors involved and we can't find anything. The two issues seem to be fighting each other: he wants to be busier but doesn't really feel like it not having totally bounced back from surgery this summer.

While I hope that Parenting Your Complex Child (AMACOM Books April 2006) will make day to day life much better for your child and the whole family, it is a continuing effort not a once done, always done.

In a way complex specials needs children such as Billy Ray are a contradiction. He needs exact sequence (order) in activities and consistency about his schedule but he does change without notice. We then must figure out what he wants changed and fix it. Billy Ray really is my best teacher but it takes close observation.

Wednesday, November 23, 2005

Today is one day I wish there was a way to upload the smell coming from our kitchen. Today is the day to make the yeast rolls my grandma taught me to make before I started school. I taught Billy Ray to knead the bread, probably far too young, because I was so anxious to pass along this tradition in my family.

As this day of family traditions in proceeding, I was thinking about a couple of articles I have read this week about acceptance of Autism versus the struggle find a cure, Sue Rubin’s article Acceptance versus cure and Susan Senator’s blog on The Autism Divide.

All this talk about cure for Autism creates a hope that it is possible and a yearning to do everything we can to bring it about for our child and every other child who struggles with Autism. At the same time our children are alive now and we want to accept them unconditionally and help them to be who they are. Today my son experiences Autism (and other things), that is who he is.

True acceptance is a hard to define. Accepting our child as a person who experiences Autism does not mean that you forget about trying to help him become the best that he can be or working towards finding a cure.

It is a balancing act between unconditional acceptance and wanting the very best for him, a cure for all his disabilities including Autism. I strongly believe that we as a society, not just parents of Autistic children, should do everything in our power to advocate and contribute financially as much as we can to research and seek a cure for Autism. At the same time we need to help our children achieve a life that is as comfortable and fulfilling an individual and to accept them as the individuals they are today.

Tuesday, November 22, 2005

I shared my thoughts relative to the Supreme Court's placement of the burden of proof in two recent posts The Burden of Persuasion and Parents Have the Burden of Proof...What Else is New. I have been reading many comments on various blogs and in the media about this decision. I wanted to share one encouraging one with you. It was titled The Sky is Not Falling by Attorney Charles Fox, also the father of a disabled child, on Special Ed Law Blogs. I think you will find it informative and encouraging. I have this blog listed in my links (on the right side of this blog) because I found it informative and thought it would helpful to parents.

I was thinking about the title of Mr. Fox's post, the Sky is Not Falling. As parents disabled children everything seems more overwhelming to us than it might otherwise be. For example, yesterday we met with my son's county case manager and talked about the new Medicare prescription coverage. The process of exploring which insurance provider who works with that program that will work for my son's individuals needs seems a daunting task in light of other things I am trying to accomplish right now for my son and in my work.

In those of us who experience sleep deprivation because of our children's issues with sleep, even small problems seem major mountains when they might be molehills if we weren't dealing with others things at the same time. I wrote earlier the elation of success is higher because our children (and therefore parents) have to struggle harder for milestones. The same applies to problems and stresses, everything seems harder.

Monday, November 21, 2005

Recently I wrote about the R Word..Retardation. I won’t go into it all again since it is still available in the archives. However, I mentioned that I teach Billy Ray we are all retarded in some ways and strong in others.

I have also shared with you that I am a “messie” a term used in Messies Anonymous to describe someone who has difficulty with household organization. I try to do too much at one time and can be distracted easily.

This weekend Billy Ray gave me a reminder of his strength and my weakness in an area. I was puttering around the house trying to get ready for a meeting with a consultant I had asked to do some staff training with one of the support staff and for the monthly support group I conduct, Lighthouse Parents. I was also trying to get this blog written and straight a few things around the house. I was running around like a chicken with my head cut off.

Billy Ray, on the other hand, was quite focused on what he wanted to accomplish. He was determined to have a milkshake (made with diabetic ingredients) and he repeatedly stayed on focus to remind me of that. Normally his constant demands might irritate me. This time it occurred to me that, I need to be like Billy Ray. He was focused on what he wanted to accomplish and stayed with it until it got done (by asking me for it repeatedly). If I stayed focused on one thing at a time instead of trying to do so much multi-tasking I would probably accomplish more.

Sunday, November 20, 2005

Dogs have long been used to help people. Seeing eye dogs and mobility dogs to help with wheelchair bound persons are more well known than psychiatric dogs and services for Autistic persons. When prescribed by a a doctor a service dog can accompany a complex child everywhere he goes just as a seeing eye dog is used for a blind person.

Billy Ray is on his second service dog though he had a pet who was a big part of his care before we knew of the service dog concept. She assists him by keeping him calm and reducing agitation.

Billy Ray and his present dog, Penny Lane, are truly soulmates as you can see by the picture. This picture was snapped one morning when Billy Ray was getting dressed and Penny Lane was napping on his pillows. It must of looked inviting because he crawled in with her and they fell asleep together. I think it shows the bonding and love between the two.

Penny Lane enables us to go places we probably wouldn't with his dog. For example, he would become really agitated in long drives but having his dog relaxes him. They usually sleep toward in the backseat. She helps him to get to sleep even if it is in a strange bed.

When he is becoming agitated sometimes just bringing his dog to him and having him pet her will be all that is necessary reducing the need for medications to calm him.

In the night he had been bouncing and talking for hours. My nerves were getting frayed from the noise and lack of sleep. Eventually Penny Lane came and lay next to him with her head on his tummy. He gently stroked her for half hour or so. It was the most quiet we have had in hours. Thanks Penny Lane!!

You can read more about her on my website and there a chapter in Parenting Your Complex Child (AMACOM Books April 2006). You can also get more information on the Delta Society website and Arf Kids.

Service dogs are not for every special needs child and his or her family. When it works it is something very beautiful.

Saturday, November 19, 2005

The holidays are special to me because I am my mother’s daughter and her mother’s granddaughter. We love to entertainment and the more the merrier. The desire to do the big meal and have the house spotless with gorgeous decorations like I used to do before Billy Ray’s complexities affected my ability to prepare the kind of meal I want to feels like too much, If we invite a big crowd it adds to the difficulty of preparing the feast while taking care of my son.

What seems overwhelming is doable with those two magic words again “adapt and communicate” and teamwork. Visuals communicate to Billy Ray what we want him to do and who is coming. We adapt by having him do tasks that he can do while I do others.

When I was a child, my maternal grandmother taught me to make her homemade yeast dough for biscuits and cinnamon rolls. Billy Ray loves to knead the dough with me. I can have him kneeding the dough while I am chopping the nuts for the cinnamon rolls. He can do an amazing percentage of the process and loves the act of “making bread” with Mom.

Grandma Wikoff also taught me to make her scalloped potatoes. We found a special potato peeler that works well for Billy Ray with his fine motor issues. He works on peeling a potato while I peel several. Then he washes them in the sink while I am slicing some, and putting the other ingredients in. He sprinkles the cheese on each layer.

My husband boils the eggs for my deviled eggs so they are ready for me to fix while Billy Ray polishes the table top and puts out clean placements. If he misses a spot the placemats will cover it usually. We count out the appropriate number of spoons, knives and forks. He puts one on each placement. Forget whether they are all in the same order. This is Billy Ray’s beautiful table and everyone enjoys his pride in it.

No we can’t put out delicate glass trinkets that he might be tempted to throw but Walmart and Target (and other places) have lots of great décor that are non-breakable and cheap. We can enjoy the beauty without the risk.

Friday, November 18, 2005

The Individual Education Plan (“IEP”) process involves a team which includes parents, teachers, various specialists (for example: speech therapist, occupational therapist, Autism specialist, etc.) and others involved with the child. Each member has their own prospective on what is best for the child. Disagreements abound. In fact, I recently saw an advertisement for a coffee mug which said “I survived an IEP”.

While writing my book, Parenting Your Complex Child, I did an internet search on advocacy. I was surprised at the time of some of the websites. It fit with the email I get from visitors to my website wherein parents described themselves as powerful advocates because they could “kick butt” and “sue the” B’s.

This is anger is probably brought on by the disrespect parents so often receive and their frustration at trying to get an appropriate plan for their child’s education. I call it the “dumb parent treatment”. Parents are told they are the leaders of their child’s team or they know their child best. However, once they disagree with a goal or method used for their child’s education, the subtle or not so subtle message “you are only the dumb parent, how dare you question a professional” is communicated through innuendo or body language. I have been told that I am not objective because I am Mom.

When conflict arises in the IEP process the victim is the child. The focus changes to dealing with the conflict. It is very difficult to achieve appropriate resolution for the child’s benefit in that type of environment.

Under the Individuals with Disabilities Education Act (“IDEA”) if parents disagree with the IEP they are able to request an “impartial due process hearing.” The U.S. Supreme Court just issued an opinion that the “burden of proof” is on the party seeking relief. This can be a school district but is most often the parents.

In reviewing the Supreme Court’s opinion, I found it interesting that it described two elements in “burden of proof”; the burden of persuasion and the burden of production (to provide evidence). The opinion stated that these cases only concern the burden of persuasion.

Therein lies the heart of the problem, the burden of persuasion. If your child is in an inappropriate school placement or approaches that are used that don’t work for him (or her) strengths are masked by behaviors reacting to poor approaches.

My son, Billy Ray can’t handle a totally sedentary environment. He needs to be focused on some active participation task. When expected to sit around a classroom table to do group activities, he would disrupt the process because he couldn’t tolerate that kind of activity. I kept telling the IEP team how capable he was in certain tasks at home on our farm. That was passed off as foolishness because what they saw was the child who threw himself on the floor or worse when he was forced to participate in a program that didn’t fit his needs.

When I started creating visuals at home to communicate with Billy Ray better, I took one to an IEP meeting with me. It never occurred to me that it would demonstrate my son’s skills to the team. While not created for that purpose this very primitive visual (you can see it at http://www.parentingyourcomplexchild.com/FeedingHorseStory.html) but certainly persuaded the team to see Billy Ray in a different light. You could literally see jaws drop and comments were made about how independent he was in the task. The director of special education and the autism specialist made an appointment to come to the farm and observe some of his activities.

Sometimes when I talk to other parents about the documentation that I do for Billy Ray especially the daily journal, they tell me they don’t have time for writing when they are working with their child. That is perfectly understandable. Obviously when Billy Ray is throwing things or running the length of the house, I can’t stop and write a description of what is going on. You need abbreviations and short cuts and sticky notes in your pocket to post in the journal later.

It does take work and create stress to do documentation. When you are tired from caring for your child or sleep deprived it seems overwhelming. It really boils down to choosing your stress and prioritizing your energy. Fighting with an IEP team to convince them what your child needs is certainly stressful and exhausting. Channeling that same energy into productive means of persuading the team of your child’s needs and your expertise relative to him is more likely to achieve the desired result.

It is my hope that my documentation will help parents meet the burden of proof should you have to go to an due process hearing. However, hopefully it will assist in the persuasion before you have to get to that type of hearing.

Thursday, November 17, 2005

I said in earlier posts that I was going to share our life with you. Most mornings I feel as if I need to somehow come across with something that will help educate and other mornings the soapbox calls me. This morning I am too tired to crawl up on the soapbox so will share our Thursday morning as we are.

It is supposed to be morning. The clock shows it is 7:45 a.m. and the sun is shining nicely. Somehow it feels more like 11 p.m. Billy Ray is wide awake as he has been most of the night. Support staff has a really bad cold so isn’t coming in today. Forget about a nap. It isn’t going to happen this morning.

We are going to see his “Dr. Brice” to see if Billy Ray has a kidney stone causing his agitation and discomfort.

Since I started this post I talked to the production editor, Erika Spellman, from AMACOM Books. I’m not sure if it is because she is on the Atlantic Coast and I’m on the Pacific Coast so she has been up longer than me or what but she is always perky and positive early in the morning. It helped me get going a bit more this morning. Despite Billy Ray’s interruptions while we were going over editorial changes, she was so patient with me. Thanks, Erika.

Billy Ray is, of course, now asleep. Go figure! I can make a choice to curl my hair before the doctor’s appointment or nap while Billy Ray does.

Wednesday, November 16, 2005

The value of life of a complex special needs child is something that I find myself getting on a soapbox about all the time. In my recent post “My Outrage … Mother Gets Suspended Sentence for Killing Son” I shared my anger at the way a mother was not held appropriately accountable for killing her Down Syndrome-Autistic son. Last night a comment came in with the link (http://www.geocities.com/growingjoel/murder.html) to a site where an Autistic man has compared the sentences received by parents who kill their Autistic children as opposed to those who kill their “normal” kids. It is harsh to read but reality.

There is a declining segment of our population that I believe is a loss to society – children and adults who experience Down syndrome. Prenatal testing now identifies disabilities including Down syndrome. The choice not to bring a child with Down syndrome into the world is increasing. Will there cease to be the loving smiles of Down syndrome folks in our world?

Parents of complex special needs children with any diagnosis have burdens far beyond what most of us would understand unless we have been there. It is full of joy and sadness. The highs of elation at small successes are beyond description and the heartbreak of watching a child struggle and suffer devastating. It is hard enough to ask for support from friends, family, and the government. When requests are misunderstood and denied the defeat is more painful and humiliating.

Well meaning governmental programs sometimes confuse more than help. There is a changing attitude on the part of society relative to disabilities. There is a great deal more sympathy. This nice but can be counter productive too. The sympathy is often directed towards parents rather than the children with disabilities.

It has been suggested several times that we place Billy Ray out of the house. Each time it it has been hinted that it is for my benefit not his. While the sympathy is nice it comes across as “why don’t you get rid of your burden?” I have no problem with programs such as group homes, etc. if it some placement could be found that he could thrive in. He is too complex for that presently so we have created a system that works for him at home. I do have a problem with the idea that he should be placed because it is easier for me not what’s best for him. Someday I will be unable to take care of him and that will be different.

I absolutely agree that parents need more support. That is why I wrote Parenting Your Complex Child, do this blog and maintain my websites. It is my desire to help parents help their child. Hopefully this post will not minimize my belief in that need.

The kind of support parents need most is appropriate programs to assist them and attempts to understand what their day to day life is realistically. There needs to be some flexibility in programs to recognize the individual needs of each child as a person. That’s why I say “this is how I figured out what worked for Billy Ray” instead of saying “do what I did.” Too often programs are designed for the general population of disabled persons and complex children like Billy Ray do not fit into those programs. The support that parents need to customize the programs to their children is hard to get.

As long as disabled children and adults are seen as a burden to be dropped or stashed away somewhere and parents receive pity instead of support, we will continue to experience the isolation, desperateness, hopelessness and hear of parents hurting their complex children.

Tuesday, November 15, 2005

I just got the Supreme Court’s decision and multiple new articles relative to yesterday ruling regarding programs for a disabled child in the educational system. I want to devour that stuff before I make many comments. When I started receiving multiple posts on various list servs with headings like Parents Have the Burden of Proof yesterday afternoon ..my first reaction was what else is new.

Parents have always had to fight to demonstrate that they know what their child needs and can do. In her wonderful book, A Thorn in My Pocket (Future Horizons 2004), Eustacia Cutler shares her struggles to get appropriate education for her daughter, Dr. Temple Grandin, in the 1950’s. We have a similar struggle now except that she fought with private schools and supposedly our children have a right to free and appropriate education now. We still have to prove they can benefit from those programs and are eligible for them.

Team building advocacy when you want to punch the lights out of some professionals works better than lawsuits.

The documentation system contained in Parenting Your Complex Child (AMACOM Books April 2006) will help with that burden of proof both at the IEP meeting stage and if you have to prove it in court.

I am going to write more on this topic in the next few days after I read more on the Court’s decision but I did not want you to think I was ignoring it.

Monday, November 14, 2005

Simple things like the sequence (order) of steps in an activity are vitally important to Autistic and other complex children and adults. It is sometimes difficult to explain that to others working with my son, Billy Ray. As long as the end result is the same most feel the steps to getting there shouldn’t matter. They do matter to Billy Ray.

Here is a case in point. A previous support staff was thoroughly trained in the sequence of steps to give Billy Ray his bath. We were especially careful in the training because Billy Ray had gone through a period of refusing to take baths and it had taken months to get him back on course. I wrote up careful instructions, modeled the procedures several times and observed her doing the procedure several times before allowing her to do it independently.

A couple of weeks following this staff’s beginning to handle Billy Ray’s bath independently Billy Ray became agitated every weekend day when I bathed him. I asked the staff every Monday for three weeks if she was having any difficulty with his bath and if she had changed any sequence of steps. She denied any problems or changes. The third weekend Billy Ray actually punched me pretty hard when I was doing his skin care and assisting him with dressing. I was totally frustrated trying to figure out what had happened and asked staff again. She still denied any change or problems.

A couple of days after this last discussion with staff the behavior consultant who was assisting us at the time came for a visit. In the course of the meeting the staff stated to the consultant “by the way I have changed your sequence of events in getting him dressed and it works much better.” I could go on about it not being the consultant’s instructions (I wrote them) and the insubordination (since I was her supervisor not the consultant) but that is not the point of today’s post.

We had designed steps that appeared to make Billy Ray willing to take a bath after refusing due to negative experiences relative to bathing in a temporary treatment center placement. He had become secure in the sequence of steps and knew what to expect each time he had a bath. This staff decided that if she put his undershirt on sooner than the instructions called for it would be better for modesty and because it was getting fall so he would be warmer.

Staff’s idea was a good one. The problem was she didn’t discuss it with me before she implemented the change as the caregiver’s manual and my verbal instruction required. Thus, Billy Ray was used to the way she did this step five days a week. When I did his bath on the weekends he was confused because I did it differently. His agitation was confusion over why I was doing it differently than he was used to during the week.

In Parenting Your Complex Child we will talk more about determining sequence of activities and steps within an activity that work best for your child. Finding a comfortable schedule and being consistent with it can make a big difference in the agitation and negative behaviors that result from agitation and confusion.

Sunday, November 13, 2005

Something is different in the way Billy Ray is acting. Maybe he is trying to do more things or maybe he is refusing to do his normal schedule. During these times I have learned to be especially mindful of these little signs.

Case in point, the past few days I have seen him picking up specks of paper that have dropped on the floor, straightening placemats on the table. This generally means he is ready for a schedule change. A consultant friend once said that if we don’t give him enough to do he will find something though it may not be what we want him to do.

This is probably a turning point for Billy Ray. He has had much adjustment in the past year. His school eligibility ended, we moved to a new community, have tried three new support staff, two of which are still with us and he has the life threatening illness that I wrote about earlier. He has taken several months to bounce back from the illness and a new diagnosis (diabetes) has come in the process. However, he seems to be feeling stronger, is confident in his full time support staff, Ron, and is communicating by this behavior that he is ready to move forward.

I spent last evening drafting a new schedule. We will add back some of the activities he did before he was ill and gradually give him more to do. We will add more community activities. Instructions must be written down so that support staff and family will assist in the activities in a consistent way. I plan to write about consistency and sequence of activities tomorrow. For now, change of schedules take several steps to achieve.

Being aware of the subtle changes in behavior is vitally important to keeping things smooth in our day to day life.

Saturday, November 12, 2005

There is so much talk about high functioning and low functioning in Autism and other special needs. Before I get on my soapbox I want you to know that I don’t believe the value of a person is based on their ability to function one way or another. The most disabled person has value to society.

My definition of high functioning and low functioning doesn’t necessary fit with other definitions which apply it primarily to IQ. I think high and low functioning has more to do with the ability of a person to function in the world. It is my belief that it is a mixed bag. Someone who is high functioning in an educational setting maybe low functioning in terms life skills, social interaction and communication. It appears that many people are higher functioning than might otherwise appear and in some cases, the reverse is true.

I just reviewed again the CNN Presents: Autism is a World; aired in May 2005 (we taped it). This presentation is Sue Rubin’s story and is written by her. Sue is a 26 year old with Autism. She was labeled retarded until she was 13 when she learned facilitative communication. Her intelligence became known for the first time. Sue is an example of what I mean about high functioning and low functioning being interchangeable.

If you were to pass Sue on a street, you would probably see her as retarded not being able to discern her high degree of intelligence. She is substantially nonverbal using a keyboard to communicate for the most part. Her tongue protruded over her upper lip a good part of the documentary. Involuntarily movements and noises are pretty frequent. She says that she increases her appearance as retarded by carrying around plastic spoons with her most of the time. The spoons are her comfort. Her high intelligence would definitely place her as high functioning by most people’s definition.

Sue is able to get funding for 24 hour staff for her in her own house because she would not be able to dial 911 or do many of the things necessary for an independent lifestyle. She states she will always need help for communication and life skills. At the same time Sue is a junior in college majoring in history and clearly bright. She gives presentations and is a strong advocate for the disabled.

My greatest fear is that many people are trapped in a low functioning world where they could be involved in higher functioning activities for at least part of the time. In order to participate in these higher functioning activities opportunities have to be adapted to conditions most useable for the individual. I truly believe there are other Sue Rubins locked in institutions or ill-fitting programs because they didn’t have the support to show hidden strengths.

Parenting Your Complex Child (AMACOM Books Spring 2006) attempts to help parents and caregivers to explore what will assist an individual in functioning to the degree reasonable for the person. Complex children need help to be who they are as a person, whether high or low functioning or mixed bag.

Of the successful Autistic persons I have been studying recently one thing stands out: they had support systems willing to find out what worked for them. In her writing, Dr. Temple Grandin frequently credits her mother for helping her succeed. The support system for Sue Rubin by her parents is clear in the above referenced documentary. Parents and caregivers make a substantial difference.

Friday, November 11, 2005

There is a perception that support staff or caregivers (or as my UK friends say “carers” – I love that) for the disabled are not as valuable as those who work in some other fields. The pay is generally low which does not necessarily increase a support staff’s sense of worth.

Finding appropriate staff is not easy partially because of the low pay and partially because it is harder work than one might think. When you do find a dedicated caregiver it makes so much difference for child/adult as well as the family.

They become best buddies with your child. Watching the relationship between them develop is great.

As the relationship builds the caregivers pride in the success and little humorous things your child may do is obvious.

When you are comfortable that a caregiver is responsible to take care of your child is it freeing to the parents. There is suddenly peace about taking time for the small pleasures most people take for granted (a bubble bath, routine medical or dental appointments for the parents, an occasional evening or lunch with one’s spouse, etc.).

Parenting Your Complex Child (AMACOM Books Spring 2006) will have information about hiring and training caregivers. It is an important part of parenting a complex child because you have to be away from your child at times. Even it is only occasional respite care having someone trained and available is vital.

Thursday, November 10, 2005

Everynight just before Billy Ray goes to sleep he asks "where we going". He means what are we going to do tomorrow. Sometimes he needs to plan his clothes out (although he rarely wears the ones he chooses the night before). We need to deal with this pattern of questions over and over again until he feels secure in the answer before he will fall asleep.

Each day there is a series of repetitive questions that will come at various times. Answers must be specific and the same everytime. He has created acceptable answers. If he is given the "wrong" answer he can become agitated, sometimes dropping to the floor and refusing to go on with whatever activity is necessary. For example, his former high school principal, Mr. Koger, has to be "in his office" whether it is 3 a.m. on a Sunday morning or noon on Monday.

It is difficult for support staff to know all the answers to his questions. Sometimes it is difficult for them to even understand his question. In the above example he might say just "Koger". This could be that he wants to wear Koger shirts or pants because he has named his dark western slacks and white western shirts after Mr. Koger too. Finally, I created two notebooks one has two strip of velcro and reads "I want" and "I feel". He can place a velcroed symbol next to the appropriate phrase to complete it on the days he can't get the words out. The other is a picture guide with his questions. He can point to the picture and support staff can read his "answer".

I some photo albums that hold 4 x 6 pictures on a clearance table at the grocery store. They are the perfect size to put in my purse. When we go to a restaurant or wherever I can pull them out. He can look at pictures instead of the constant repetition he makes about what he wants or what are we going to do next. I change the pictures before we leave for whatever activity to have as many of the answers to anticipated questions as possible in that little book. He also has his planner (see Planners on my website for more details) with him most of the time which answer most of the "what are we going to do" next questions.

Is this an Autistic thing or a Down Syndrome thing or just a Billy Ray thing. It doesn't seem to matter, we just keep adapting what works for him.

If you do something different share it in the comments. It might help someone else to adapt to their child.

Wednesday, November 09, 2005

Apparently the picture of Keddie's client in his electric wheelchair peaked a lot of interest. Several people looked at older posts and made comments. My email server was ding donging a lot that I had comments.

While our children might share a common diagnosis such as Billy Ray's Down Syndrome, Autism, Bipolar, ADHD they are unique individuals. I can share about Billy Ray but your child or adult child may experience life differently. I believe that parent helping parent is the best education. I don't want this to be a one sided blog. Your comments help others.

I do feel that I have something to share with parents of younger complex children. However, the biggest goal is to encourage others to communicate and adapt. It is my hope on this blog, in Parenting Your Complex Child (AMACOM Books April 2006) and my websites to help parents figure out what works for their child as an individual. I don't expect you to do what I do for Billy Ray. I want to help you find what works for your child.

Talk to me. Tell me what is helpful in this blog and what isn't. If you have something to share about your child it will help others reading too.

I just have to share that one of the comments I got last night was from our granddaughter, Alena. My husband is at their house helping his son build an entertainment center for their television. He helped them find the post I did What I Learned from My Grandchildren. It was so special to me to get that comment.

This part is off today's topic but I just wanted to share that when I talked to my husband I was telling him that the evening before when Billy Ray was talking with granddaughter, Elora he was really responsive to whatever she was saying. He told me that she was asking him very specific questions about his recovery from surgery and if his pain was all gone, etc. Elora has this incredible ability to draw out things from Billy Ray that no one else, including his doctors can always do.The relationship between Billy Ray and his nieces and nephews makes such a difference in his life and ours.

Tuesday, November 08, 2005

After I wrote the post about Retardation and BillyRay saying he is "tarded", my friend Keddie aconsultant to people with many types ofdisabilities sent me this picture in an emailsubjected "who's tarded". Apparently she washaving difficulty with her old car andanticipated that she would need to rollher car down her client's driveway toget it started when she was ready to leave.She had miscalculated. The picture is truly wortha 1,000 words. I'm going to let it speak for itself.

Monday, November 07, 2005

I fell in love with the personality common in many children and adults who experience Down Syndrome more than 35 years ago because of our little neighbor girl. Over the years I have worked with many children and adults with Down Syndrome diagnoses. The frequent smiling and seeming to just go with the flow was common among those I worked with.

When Billy Ray came to us at 15 months old the only diagnosis was Down Syndrome and chronic ear infections. His personality was laid back and happy most of the time although he terrible twos set in quickly. He was content to do things with me around the house and go with me wherever we needed to go. Change in routine didn't bother him that much.

Now Billy Ray has a dual diagnosis of Down Syndrome and Autism plus a few other ones thrown in, bipolar, ADHD and medical ones we won't go into today. He is not nearly as "go with the flow". Change in routine can set him off in various ways ranging from "drop" (throwing himself on the floor in confusion or frustration) to full scale agitation (which might be aggression or throwing things including furniture). His constant noise, much of it just noise not verbalization and agitation is difficult to deal with for a Mom who loves quiet. The personsality I fell in love with all those years of working with persons experiencing Down Syndrome is still there but it doesn't come out as much. Our lives are full of routines and methods of communication that keep us fairly regimented.

My husband is visiting his sons in another state. Billy Ray doesn't like it when his stepfather goes away but he has handled it better this time than sometimes. When it happens on a weekend it is more difficult because he is already off schedule for weekends and we don't have support staff on Sundays.

After dealing with a clogged up tiolet which ran over onto the freshly mopped floor, our Sunday went fairly well. We didn't make it to church because of Billy Ray's need to stay close to the tiolet and dealing with the clogged tiolet. I anticipated an explosion or at least a "drop" at anytime but it didn't materialize.

I realized last night putting him in bed that we had a bit of the old Billy Ray while he experienced the single diagnosis of Down Syndrome yesterday. He was happy to work with me puttering around the house getting some things I have wanted to do for a while done. Other times he watched a movie in the living room where I could see him while dejunking the kitchen counters something I had longed to do for weeks. We made diabetic cookies together and he loved taking them off the cookie sheet with a spatula. We went out for an early dinner together despite the snow and had a pleasant time.

It was a nice time just being with my son this weekend. It reminded me of the time we spent together following his Dad's death when it was just us.

Sunday, November 06, 2005

It never occurred to us to tell Billy Ray that he was mentally retarded when he was younger. I always feared someone would call him a "retard" or something equivalent but as far as I know that hasn't happened.

Billy Ray first heard the word from a teacher in his sophomore year of high school. I understand that the teacher was trying to help his students to face reality. The problem was the students in his classroom were not all able to understand what he was saying. Billy Ray didn't understand at all. He got the message that he is no good and that he can never accomplish anything. Years later Billy Ray will still say "I tarded" from time to time.

Think about the word retarded. To retard something just means to slow the progress. We tell Billy Ray that retarded just means slow. I tell him that we are all "tarded" in some ways. There are things that I am slower at than Billy Ray. For example, when we lived in a day ranch house where we needed to carry big bags of pellets upstairs for the fireplace insert to heat the house, I couldn't do it. Once we helped him pick up the bag Billy Ray could almost run up the stairs with the bag.

There has been media coverage of various persons considered to be Autistic savants. These persons have incredible abilities in one area or another yet may not be able to do many simple tasks in other areas. This is somewhat true of most retarded people and for that matter all of us. We are all retarded in one area and strong in another. It is just more pronounced in those with mental retardation.

I realize that I am oversimplifying here. The point I am trying to make it that being retarded doesn't mean nothing can be accomplished. Some can accomplish more than others. The child in a wheelchair who requires total care may offer a smile or some interaction that perks up everyone she meets. I once knew a man who worked in a thrift store and was probably a better salesman than many professional sales person..he knew his stock well and communicated to customers that he cared about them. Billy Ray has to have support staff with him but he touches the lives of others by delivering meals on wheels to seniors every week.

Saturday, November 05, 2005

There is a lot of media coverage of Autism lately. ABC especially seems to have something about Autism on every week or so. The problem I have with it is most of the coverage is about high functioning children.

When we think of Autism we tend to think of the movie Rain Man just as we think of Corky from Life Goes On when we think of Down Syndrome. I wish it were so in reality. Autism is a spectrum disorder. There are many levels.

Some on the spectrum will participate in normal education and succeed well. Perhaps the most well known person to experience Autism is Temple Grandin, PhD who has authored numerous books on Autism and Animal Behavior (she has a PhD in Animal Sciences), is a professor at Colorado State University, travels most weekends speaking on one or the other of her two areas of expertise, is independent and thriving.

Many who experience Autism are on the other end of the spectrum. Some are not able to meet any of their personal care needs or achieve any degree of independence. They may need round the clock care for their entire lives. My own son, Billy Ray, for example, is so complicated that he doesn't really fit into any established programs. Everything must be totally adapted for his unique needs.

I wrote about the low functioning recently in my October post called Low Functioning..Not No Functioning if you want to review that post.

I appreciate the media attention to Autism especially since it is occurring in epidemic proportions now. However, I don't think always featuring those on the high functioning end of the spectrum gives the whole picture.

Friday, November 04, 2005

I continue to marvel at how well Billy Ray tolerates the procedures that must be done for his medical care. He sits there calmly while we do the finger pokes for his blood sugar despite the fact that Mom is just learning to do them and on occasion has to poke more than once.When he has to have an IV or blood test at the lab he sticks his arm right out there and holds it pretty still. The technicians who draw his blood are really lucky they are drawing from him not his Mom. My father's side of the family passed down rolling veins to me. My veins will literally jump off the needle. I have had so many bad experiences in my life I squirm when I have to have blood drawn. Not Billy Ray, he cooperates so well.Yesterday he had a catscan. One of the technicians commented on what a good patient he is in comparison with many patients they see.This morning I was thinking of something I read by Wayne Gilpin, Future Horizons, talking about his son complimenting him and then saying he didn't want to hurt his Dad's feelings. Mr. Gilpin said Alex gives and Alex takes away. That is what I am thinking about Billy Ray this morning. He was so good yesterday during the procedure and he was so tired that he crawled into bed on his own at 6:30 p.m. last night. I got a quiet evening last night which doesn't happen to often. However, he woke up for the night about 1 a.m. so we have been up since then. Billy Ray, too, gives and Billy Ray takes away.Until tomorrow,Peggy Louwww.parentingyourcomplexchild.comwww.lighthouseparents.com

Thursday, November 03, 2005

I was talking with my wonderful editor, Ellen Kadin at AMACOM Books, a couple of days ago. She referenced the stress of my life with Billy Ray. I said to her that she probably had as much stress as I do. She said no way. Certainly the stress of parents whose children have various special needs including combination of diagnoses Billy Ray experiences (Down Syndrome, Autism, ADHD and Biplor) is different than that of the average family and probably more extreme.

Up with Billy Ray in the night, my mind wondered to subject of parents who become so desperate they kill their kids and those who deal with the stress better than others. It seems that part of it is the way we as parents receive and accept support. It would be easy to just believe no one understands and give up. The truth is no one really does understand until parents are able to communicate their situation to others. The documentation system helps a great deal.

Most people want to understand but it takes learning to communicate with others in ways that they can receive it. The response will depend greatly on the approach. If we are militant in approach the support is less tolerance than if we are able to say that doesn't work for my son because he responds this way or that. Disabilities have been somewhat a hidden secret that we didn't want to share. Openness about what we experience brings understanding, isolation defeats it.

Support systems are vital but sometimes hard to accomplish. In the old days when we got tired of fighting the school system, there seemed to be no help from governmental agencies and the doctors were admitting their frustration with my son we lived the life of desperatation and isolation. In that hopeless we can get into survival mode and do some foolish things just trying to survive day to day.

Returning to my faith was a major turning point for us. The strength that comes from the lighthouse concept which I discused in an earlier post and is explained on one of my websites www.lighthouseparents.com/Lighthouse_Concept.html has brought endurance I never experienced before. Then deciding that we needed the church family was another. It was not easy to find a church home because Billy Ray can be a disruption in services. It meant creating that church family. When you are tired and stress that it is difficult to do. I just called pastors and got bold enough to say this is what we need in a church family can your church accept us.

Presently the support system in our small town church is incredible. This past July, Billy Ray was in the hospital for 13 days, 9 days of which were in Critical Care on the ventilator. Pastor Richard and his wife, Denise, at Grace Fellowship Church of the Nazarene, were there whenever I called and often when I didn't call. Denise called almost daily to see if there was anything we needed or how they could support us. Many times when we would come out of the CCU there was someone from the church in the waiting room wanting to check on us and assure we didn't need anything.

One day the volunteer for CCU who assisted with getting us into see our family members in the unit was telling us about RV spaces the hospital made available next to the hospital. I just spaced it because we don't have an RV. When some ladies from the church came later my sister-in-law mentioned to them that we could use an RV. I have to admit I was bit embarrassed and would have found it hard to ask for it myself. That same night Denise called to say that it had been mentioned in ladies prayer meeting. One family was loaning an RV to us and another was hauling it to the spot the next day. What a difference it made. Sometimes I wasn't there many hours of the night but every morning I could make my own coffee with the Irish Creamer I love.

Since he has been home from the hospital, Donna (otherwise known as the cookie lady) has been making Billy Ray high fiber cookies every week to help in his difficulty with constipation. He will eat them much better if someone other than Mom makes them even though the recipe is the same. Now that he is diabetic she is more than willing to make them in whatever way he needs once we are ready to resume that.

Support is more likely to happen if we are open about our needs. That doesn't mean we go begging for help. In the above examples, I didn't have to even ask. Because we were known and loved as a part of this church family there were there for us. It reminds me a great deal of the church described in the Book of Acts. When one has a need the others help.

It does not always need to be a one way street. Billy Ray contributes to the church family in his own way too. He needs vocational activities that are adapted to his strengths. He enjoys things like emptying the garbage and vacuuming. He goes to the church to do those things as he is able. He is proud of that accomplishment.

A cute story about his activities at the church happened recently. I happened to be there in the office when his support staff brought Billy Ray in to do some tasks. A men's Bible study was going on. I heard him interrupt the men and was embarrassed. I told the support staff not to let him do that anymore. However, I heard from wives of some of the men, our pastor and others how much that meant to them. Dave told me that they discussed how all that Billy Ray wanted from them was a hug and he hugged everyone of them. They thought that was special. He is an accepted part of this family.

Wednesday, November 02, 2005

I recently read stories of mothers that killed their disabled children. The case we are discussing below had Down Syndrome and Autism like my son Billy Ray. I have continued to be outraged over the fact that parents feel there is no other answer. I will never condone the action but do have some understanding how they could become that desperate.

As the mother of a nearly 23 year old for whom we have had difficulty finding services because of his complexities, I can identify with the mother's plight. As I have talked herein already sleep deprivation can have a major impact on the child or adult and his parents. I can imagine her frusration because I have been there with Billy Ray except that he doesn't harm himself he beats on me and sometimes his caregivers.

In July of this year he was literally pulling out handfuls of my hair and throwing harder punches than he ever has before. As I shared in an earlier post Communication by Behavior, Billy Ray had a leaking appendice, gastritis and an enlarged pancreas. I took him to the emergency room that night and the doctor, who didn't know Billy Ray or me, there he found no reason medical reason for his behavior or complaints. He was going to prescribe psych meds and send him home. I advocated for continuing testing and the catscan revealed the above situation. I can't help but wonder if Patrick was trying to communicate something to his Mom or others by his behavior.

In the Guardian piece (second link) the dcctor related that he had never seen anything like Patrick's behavior and didn't know how the mother endured it. My outrage extends to that doctor as well. Why didn't he prescribe some additional medication and keep Patrick in the hospital until they could help him and his mother?

Instead of feeling sorry for the desperate plight of the parents and failing to hold them accountable for their actions, it is time for society to look at themselves. There should be outrage not only at the mother but at the lack of help available to her.

In all fairness, I have to mention that the Guardian story does say that this mother was a "very independent mother" who didn't accept all the services offered to her. There is not enough detail to be clear on that. However, I know the difficulty in getting appropriate services for our complex children. It is sometimes the path of least resistence to pull ourselves and our children into isolation rather than fight any more. I have been there for a time.

It is time for us to become involved in advocating the right way. Our outrage needs to be channeled in appropriate ways or nothing will be accomplished. Nevertheless, we can no longer just ignore this dilemna.

Until tomorrow,Peggy Louwww.parentingyourcomplexchild.comwww.lighthouseparents.com

Tuesday, November 01, 2005

I suppose there are times as adults that we would still like to be held by our parents when we need comfort. We would no more think of crawling up on Mom's lap. Billy Ray doesn't have those concerns at all. Forget that he will be 23 next month and weighs 145 lbs. Mom's lap is still a place of comfort for him. He will say "rock you me".

It is quite a contortion we have figured out to deal with his added weight. I sit in my recliner positioning his legs over the arm of the chair to take some of the weight and he leans on my other arm but somewhat on the chair too.

We sing silly songs and laugh together. Funny how comforting it is to both of us. For that moment blood sugars, IEP's and the like loose their importance.

We often read a little book Love You Forever by Robert Munsch. That little book goes through the stages of a child's life. At the end of each stage the mother goes into the child's room and sings a little song "I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be." (Sorry I couldn't figure out how to block quote on this blog yet.) She goes to his house at the end to rock him as a grown man.

I was thinking that even when our complex children are grown they remain more our babies than most kids. The documentation system that I share in Parenting Your Complex Child (AMACOM Books Spring 2006) will hopefully mean that our parental care stays with our adult child even when we can no longer take care of him.